please remain seated for the rest of your life

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This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “please remain seated for the rest of your life.” There’s a link to all the vignettes at the end of the post.  

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please remain seated for the rest of your life

I’ve been sitting in this chair for hours. For days. For weeks. For months. Maybe I’ve been sitting in this chair for years; I don’t know. Why does that old lady in the wheelchair keep moaning? Is she sick? Why doesn’t someone help her? Why am I here? It’s so noisy. Beep. Beep. Beep. I want to go home. What is that beep, beep, beep? It makes me nervous, all that beeping in my ear.

I’m tired of sitting in this chair with no one to talk to and nothing to do. People walk by me to and fro. What are they so busy doing? I’m busy too. I have things to do. I have places to go. I’ve got to get out of here. I’m going to stand up. My legs are a bit rubbery, but it feels good to stand. I want to stand. It feels good. Oh dear. What’s that buzzing? And more beeping. Louder beeping. Louder and louder.

“Annie!” A voice scolds me. Suddenly, there’s a hand on my shoulder. It pushes me back into the chair. I sink and sit. My bottom makes a little thump.

“Sit down, Annie! You’re not allowed to stand up,” the voice says. I try to get up again. The hand holds me down where I am. It stays on my shoulder. A face leans into mine. Close.

“You’re not allowed to get up, my love. You’re not allowed. You might fall down and hurt yourself.”

I’m not afraid of hurting myself. I sit in this chair for hours. I cross my legs. I uncross my legs. I pick the polish off my fingernails. People walk by. To and fro. To and fro. They have somewhere to go. I want to go too. Let me go.

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© Susan Macaulay / MyAlzheimersStory.com 2016

Image copyright: imageegami / 123RF Stock Photo

11 Comments

  1. Pingback: 20 questions to ask yourself about “wandering”

  2. Many of us do not spend time in a nursing home unless we absolutely have to. And that usually means we have a family member who is a resident. Or if you’re like me, you volunteer to go and visit.

    I was at Golden Living Center – Three Oaks in Marshfield, Wisconsin yesterday. I go every week for a few hours. When I read this blog post it hit me how it so accurately captured what I see and hear every time I go there. I am not saying that Three Oaks is any worse than any other nursing home. The point of these articles is that this is too often the normal way things go and the staff are often oblivious to how the residents are truly feeling and what they are experiencing and how they are interpreting their environment.

    For me, reading this short article, I didn’t just picture the narrator or main character that was describing what she was experiencing. Instead, I pictured the real people I see every week at Three Oaks.

    I thought of the quiet gentleman who keeps standing up and setting off the beeping of his chair alarm only to be told to “sit back down” (and just yesterday I heard a staff member use the same line in the story: “we don’t want you to fall and hurt yourself”). I thought of other residents who you can see getting agitated by the loud beeping that goes off every few minutes.

    I also thought of a certain man and a certain woman who every time I go there — no matter what day or what time, and no matter how long I stay there — are always sitting in the exact same place: he in the same recliner, and she in the same chair at one of the dining room tables. One day I tried to sit in the same chair there for as long as I could and just quietly observed. I lasted about 30 minutes before I had the urge to stand up and walk around. I can’t imagine sitting in the same chair all day! Once, after greeting a resident after just coming on to the Alzheimer’s care Unit, she said to me: “I’ve been sitting in this chair for hours. I don’t know what I did, but that lady is mad at me and told me I had to sit here.” It was clear to me that this was her perception and interpretation of her situation, but it was also clear that this was her reality, regardless of whether it was actually the truth or not. It was the truth to her.

    I also thought of the anxious woman who every night after dinner whats to call her daughter to come get her and take her home. Just like the lady in the story she tells me she needs to get home because she has things she needs to do. The strategy of the staff is to tell her “we already called” or “the phone is busy now so you need to wait” — and when that doesn’t work then they just ignore her. I heard one staff member say to another “She does this every night. She’ll get over it eventually and forget about it.”

    And I think, “Am I the only one who sees this all as real, genuine, suffering?” The anxiety of wanting to call a family member to come take you home, the frustration of being ignored, the fear of being punished, the sadness and often the tears that fall when you realize no one is willing to help you; and the restlessness and the need to get up and stretch, and the longing for free movement and independence — these are all too real to these residents. This is not something to be ignored.

    People with dementia perceive their environment, their relationships, and themselves in very real ways that are often different from our reality as caregivers, staff, family members and friends. We need to put ourselves in their shoes — or perhaps in their chairs — and change our perspective and the way we provide care.

    • “I’ve been sitting in this chair for hours. I don’t know what I did, but that lady is mad at me and told me I had to sit here.”

      I know those words, Doug, and I wept as I read your comment. I see the people whose stories you tell as clearly as I see the full moon outside my window.

      This series based on the NHBPS is ongoing; today’s vignette is entitled “what a shame,” is here.

      I’ll be in touch.

  3. Bravo Susan. Clearly there is a need for an advocate to bring change to the system you are dealing with. My mother was in a care facility in Vancouver for two years and although the care at times needed better funding I am appalled at what you are witnessing first hand. Can the care vary so much in the east as that in the west?
    Scottish Rona (ex Dubai).

    • Rona, thanks so much. Your comments always mean a great deal.

      These vignettes are based on conversations I’ve had with care partners around the world including Australia, United Kingdom, United States and Canada. My creative non-fiction fictional stories are informed by the stories, comments and experiences of members of my worldwide network as well as observations I’ve made as part of my own personal experience over the last decade.

      Just this afternoon I spent an hour on Skype with an occupational therapist who works for the NHS in UK and who daily fights an uphill battle to see that people with dementia under her care are treated with the respect they deserve. I am in regular contact with Australian colleagues who are as passionate as I am about creating change. I liaise with other across Canada and the US.

      There is a growing tide of change spearheaded by the likes of Teepa Snow, Dr. Allen Power, Naomi Feil, Dr. Bill Thomas of ChangingAging, and others.

      But there is SO MUCH work to be done. We have to change the whole western paradigm of what it means to age and die.

      Unlike many economically blessed nations, Canada does not have a dementia care strategy, and it has one of the highest rates of drug consumption in the world. Elders in the province of Quebec are prescribed antipsychotic medications at rates four times as high that of other provinces: 1.3 prescriptions of antipsychotics per person. The rate of psychosis in the general population (for which these medications are intended) is about two per cent. I would characterize the way elder people with dementia are sedated with antipsychotic medication in Quebec as abuse.

      If you plan on getting old, better start advocating with me now 🙂

  4. divakaren2013 on

    Wonderful article Susan! If only more people were able to think how it must feel …from a person living with dementia’s point of view.

    Just love Teepa Snow, her videos and the amazing way she gets people to think!

    Downsizing Diva and Metroland Media are hosting a Caregiver Show on Friday, May 6th at the Ontario Science Centre in Toronto. Admission is FREE and our goal is to have lots of family caregivers join us and discover the many community resources and support available to help them on their caregiving journey!

  5. I do see this. So I make changes happen as the Well being and Activities Coordinator where I am. I ask for people to be assisted to activities should they want to walk, obviously i know who enjoys what. I see facial expressions and know who I need to be spending extra time with over the hours I work. People walk with a purpose and do not wander. I seethe if I hear this, and speak up for the person. If Annie was in my home I would speak to Annie and ask if she wanted some support to walk somewhere. If Annie was unable to walk then I would most definitely not pass bye without saying hello at least. But Annie would definitely be left with items that she might like to engage with. I have a rule never walk past a communal area without saying hello. I might be busy but whats ten minute when it breaks the silence and engages someone throughout there day.

    • Good for you Anon! Keep up the good work. Hopefully others will see and follow your example. We need more like you in the care system. Thanks for sharing your experience and I appreciate your comments and observations <3

    • Well, I don’t know for sure because I don’t have Alzheimer’s yet. But I’m fairly intuitive, and I’m an amazing observer, and I think I’ve gotten it pretty close.

      I hope it can help you and your mom in some way <3

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